All the passages below are taken from the book “The
Best Care Possible: A Physician's Quest to Transform Care Through the End of
Life”By: MD, Ira Byock. It was
published in 2012.

I listened carefully as Mrs.
Maxwell’s family described their beloved mother, aunt, and grandmother.

We sat in a crowded conference
room in the intensive care unit or ICU. Six members of Janice Maxwell’s
family were present— her daughter, Evie, and her husband, Frank; her son, Ellis,
and his wife and their son, Ellis Jr.; and Cici, a niece who lived next door to
Mrs. Maxwell. In addition to myself, there was Dr. Carrick Utley, an oncology
fellow rotating through our service, Dr. Christine Geffen, Mrs. Maxwell’s
current attending critical care physician, a consulting neurologist, a nurse
practitioner from the cardiology team, the primary nurse taking care of Mrs.
Maxwell today, as well as one of the ICU social workers and a chaplain.

Members of two additional
specialty teams (infectious disease and cardiothoracic surgery) that had
consulted on Mrs. Maxwell’s care could not be present. Neither could our
patient. Janice Maxwell was being ventilated— breathed for— in ICU room 11.
There were important decisions about her care that her family and health care
teams needed to discuss this afternoon.

At about two o’clock I had paged
Carrick, who was in his second of four weeks with our service, a recently added
requirement of Dartmouth’s Hematology-Oncology fellowship program. He had spent
the morning seeing patients in clinic with Betty Priest, one of our team’s nurse
practitioners, and Laura Rollano, our social worker. I wanted him to join me for
the upcoming ICU family meeting.

We arrived at Mrs. Maxwell’s
bedside while her family was still gathering in the ICU waiting room. Carrick
and I briefly evaluated Mrs. Maxwell. We spoke to her, letting her know who we
were and that “we are here to check on you,” and touched her hand and her brow.
We looked for any response. There was none. We took note of the five IV drips
and the current rates of each medication. Carrick jotted data from the monitors,
recording her pulse, blood pressure, oxygen saturation, and the settings of her
ventilator. He and I discussed her medication dosages and overall condition with
her nurse.

At sixty-nine, Mrs. Maxwell’s
health had not been good for many years. In addition to being overweight,
she had high blood pressure for which she took two pills daily, and diabetes for
which she took two types of insulin. Each morning she injected a long-acting
insulin, and when her finger stick glucose tests were high after meals, she gave
herself an injection of short-acting insulin. Until now, however, she had never
been seriously ill.

Three weeks ago, Mrs. Maxwell
developed a fever and generalized achiness. Then, while sitting at her kitchen
table clipping discount coupons from the weekend Valley News, she suddenly
became blind to anything in her right field of vision and felt dizzy, as if the
room were spinning. Her niece, Cici, was upstairs and heard her aunt call out,
which Cici described as a loud grunting. When she saw her aunt on the kitchen
floor, she immediately called 911 and comforted her until the ambulance arrived
and the EMTs (emergency medical technicians) whisked Mrs. Maxwell away to the
local emergency department. There the doctor readily diagnosed a stroke, but
also astutely recognized the constellation of fever, diffuse aches and pains,
and localized neurological deficits as symptoms and signs of endocarditis, a
bacterial infection of one or more valves in her heart. The emergency
department doctor documented a characteristic rash and small hemorrhages that
looked like tiny splinters under Mrs. Maxwell’s fingernails. Blood was drawn for
laboratory tests, including bacterial cultures, an IV was started, and she was
transferred to Dartmouth-Hitchcock Medical Center.

Mrs. Maxwell’s infection likely
began with a sore on the side of her leg. Now deep in her heart, the blood
cultures and echo cardiograms revealed clusters of staphylococcus on the
cords and leaflets of her aortic valve that were sending infected debris into
her circulation— like microscopic bacterial barnacles swept along in the
current. Some landed in her brain where they blocked small arteries and caused
sudden symptoms. A few of her symptoms— her dizziness and confusion— initially
improved over the first day as spasms in the walls of arteries acutely affected
by the emboli gradually relaxed. However, these were not simple blood clots or
fragments of atherosclerotic plaques. Each embolus was a minute bit of pus.
Everywhere they landed a bacterial infection was sown. Each infected arteriole
in the brain’s circulation was capable of bleeding. All of this explained Janice
Maxwell’s sudden loss of vision, the vertigo, and her waxing and waning level of
awareness.

Her brain was not the only organ
affected by the acute condition. Some of these bacterial emboli landed in the
kidneys and various muscles, and some in the tips of the capillaries in her
fingertips. But the lesions in her brain were the most dangerous threats to her
imminent survival and long-term recovery.

On admission to the hospital Mrs.
Maxwell’s condition was tenuous. She was sleepy and seemed not to notice her
loss of vision to her right. When asked by the nurses and physicians at DHMC,
she placidly said she understood where she was. Also, whenever asked, she told
them she was not in pain. Within forty-eight hours of her admission to DHMC,
Mrs. Maxwell began to improve. Antibiotics seemed to halt the progression of the
infections in her heart and brain. As the intravenous medications seeped
into tissue fluids throughout her body, the infection and inflammation began to
wane everywhere else the bacteria had landed. Her fever subsided. Her condition
became less immediately life threatening. She was slightly more alert and able
to enjoy a few spoonfuls of applesauce and Jell-O.

At 6: 22 the evening of her
third hospital day, Mrs. Maxwell suddenly became unresponsive and her breathing
became shallow. Her daughter, Evie, and Evie’s husband, Frank, had been
visiting in her room and, alarmed by the abrupt change, immediately called for
Mrs. Maxwell’s nurse. The hospital’s emergency response team—“ HERT team” for
short— was called and she was intubated. The critical care fellow stood
above Mrs. Maxwell’s head as she lay motionless on her back. He opened her mouth
with his thumb, slid the blunt metal blade of the laryngoscope over her tongue,
lifted her tongue until he could see her larynx in the light of the scope, and
passed a plastic tube the width of her index finger through her vocal cords and
into her trachea. The other end of that endotrachial tube was then firmly
connected to a football-size bag of oxygen, which was then held and rhythmically
squeezed by a respiratory therapist who walked alongside Mrs. Maxwell as she was
moved, bed and all, to the ICU.

On arrival, an ICU nurse took
over “bagging” Mrs. Maxwell, while the respiratory therapist reconnected the
endotrachial tube to a mechanical ventilator. Ever since— for the last
twenty-two days— the ventilator had generated a breath up to fourteen times a
minute, every time four and a half seconds went by without Mrs. Maxwell drawing
a breath on her own.

A new CT scan showed a new
shower of fifteen or more small strokes. Neurologically, this was a major
setback. Although people can improve, sometimes surprisingly, in the early
days or even first few weeks after a stroke, the cumulative impact of Mrs.
Maxwell’s successive strokes portended ill.

From a cardiovascular
perspective, she was stable, at least for the moment. But her aortic valve
was damaged by the staphylococcal infection and at high risk of failing. And
were her aortic valve to fail, the strain on her already stressed heart muscle
would likely kill her within minutes. At best, the infection could be suppressed
for weeks or even months.Any cure would require surgery to replace her
infected aortic valve with a mechanical one (her heart was too large for the
bioprosthetic valves made from pig hearts or from human cadavers).
Unfortunately, her strokes would preclude the blood thinners that are needed
after a mechanical valve replacement to prevent clots and emboli. In this case,
anticoagulant medications would almost certainly cause significant bleeding in
her brain. It was a damned-if-you-do, damned-if-you-don’t situation. Yet, even
without those complicating factors, Mrs. Maxwell’s other health problems,
including diabetes and her five foot, three inch, 280-pound body habitus, led
the cardiovascular surgeons to believe she would not survive the surgery. In
their written consultation, the CT (cardiothoracic) surgery team did not offer
to operate, but suggested continued aggressive medical management and offered to
reevaluate in several weeks if her condition improved.

As we met in the ICU conference
room on this mid-November afternoon, Mrs. Maxwell’s overall medical condition
was bleak. Since the day she was urgently transferred to the ICU, she remained
minimally conscious. Unlike most patients who require pain and sedative
medications to suppress coughing or involuntarily “bucking” the ventilator as it
pushes compressed, oxygenated air into their windpipes, she tolerated it all
without medication. That was not a hopeful sign.

The large majority of every
day she was completely unresponsive, making no movements and lacking any visible
response to someone’s voice or to being touched. Occasionally, just once or
twice during each of the last few days, she made a facial expression or seemed
to grip someone’s hand, but it was hard for any of the doctors or nurses to tell
whether the movements were purposeful or merely due to muscle reflexes.

Dr. Geffen, the critical
care specialist currently in charge of her care, consulted our Palliative Care
Service. She wanted us to assist Janice Maxwell’s family in clarifying goals
for her care in the context of her stable but dire condition. On the
administrative data collection sheet we use to monitor referrals to our program,
“clarify goals of care” is the most commonly indicated reason we are consulted
for hospitalized patients. Dr. Geffen hoped we could help the Maxwell family
understand and sort through treatment decisions concerning long-term ventilation
and medically administered nutrition and hydration that needed to be made.

When I spoke to her, Dr. Geffen
described the Maxwells as a devoted family whose members were having difficulty
adjusting to the severity of the patient’s condition. It was a particularly
difficult situation, she felt, because on any given day Mrs. Maxwell was neither
improving nor deteriorating. However, the consensus among the medical teams
involved in Mrs. Maxwell’s care was that her prospects for long-term survival
were slim and her prospects for recovering any semblance of independent function
slimmer still.

I had briefly met Mrs. Maxwell’s
daughter, Evie, and son-in-law, Frank, before the afternoon’s meeting. About 6:
20 the prior evening, I had stopped at her bedside, arriving just as they were
leaving. They were both wearing jackets over work clothes. Evie wore a Shaw’s
supermarket smock and Frank a mustard yellow poplin shirt with his name and the
logo of a heating oil company. I introduced myself, briefly explained the role
of our palliative care team, and said that I would be involved in the next day’s
meeting. They acknowledged the gravity of Evie’s mother’s condition and thanked
me for coming by. They apologized for being unable to visit longer, explaining
that they needed to get home to their teenage son and household. Brief as it
was, the encounter set a friendly tone for the conversations to come.

This afternoon, Carrick and I
stood with the Maxwell family for a few minutes in the busy inner corridor of
the unit. As an earlier meeting was ending and people filed out of the ICU’s
only conference room, I exchanged polite smiles and nods with several nurses,
residents, and a housekeeper who passed by. Our palliative care team members are
familiar faces and names in the ICU, a result of working closely with the
critical care teams.

Connie Pollock, the ICU social
worker, had text-paged each of the doctors and the nurse practitioner involved a
few minutes earlier, reminding us of the meeting. Now, she and I acted as ushers
to get everyone into the room. Members of Mrs. Maxwell’s family took seats
around one end of the long, old, blond oak conference table, sitting in sturdy,
stackable gray plastic chairs that are ubiquitous throughout the medical center.
The walls were a cluttered mosaic of flyers announcing upcoming conferences and
a going-away party for a nurse, and quality-improvement project posters with
graphed monthly scores of ventilator acquired pneumonias and intravenous line
infections from August to October. On a large whiteboard that occupied half of
one wall, handwritten diagrams and formulas for calculating vascular resistance
gave evidence of a recent teaching session.

As soon as everyone was settled,
Connie nodded to me and I spoke.

“Hello, everybody. For those of
you I haven’t yet met, I’m Dr. Byock, I am with the Palliative Care Service.
Since there are a number of us here, I suggest we start by introducing ourselves
to one another.” I turned to the woman on my right who nodded in recognition.

“Thanks, Dr. Byock. I am Evie
Chandler, Maxie’s daughter.”

“I am Frank Chandler, Evie’s
husband, and Maxie’s favorite son-in-law.” He smiled beneath his Red Sox hat.
His comment generated muted chuckles from other members of the family. One
muttered it was only because Frank was her only son-in-law.

The light but respectful tone
persisted as each person, in turn, family and clinicians alike, gave his or her
name and relationship to Mrs. Maxwell and her care. Thus, the meeting began.
Each member of Mrs. Maxwell’s family, doctors, and staff introduced themselves
in turn. Then it was time for me to get to the purpose of our gathering.

There were two decisions that
needed to be made— if not today, then very soon. One concerned whether or not to
place a tracheostomy tube for long-term mechanical ventilation. The other was
whether to place a PEG (percutaneous endoscopic gastronomy) tube for nutrition
and hydration.Both procedures required formal consent. Assuring a
clinically sound and ethical process for making decisions about Mrs. Maxwell’s
care was the immediate reason for meeting. Of course, it was not just the risks
and potential benefits of these procedures that warranted discussion, but also
her overall condition, prognosis, and care in general that needed to be
discussed. As the facilitator of the meeting, I felt it was important for the
discussion to be grounded in the life and person of Mrs. Maxwell.

The clinical teams knew an
enormous amount about her organ functions and the intimate anatomy of her brain
and heart, but none of us had ever met her before her stroke. We had spoken to
her, but never with her.

“We have a number of things to
discuss today about Mrs. Maxwell’s condition and at least two treatments to
consider. But since I have not previously met you and have never had the
opportunity to meet before her illness, I thought it would be helpful to get a
sense of who she is. I know that she is widowed and owns a bakery. But that is
all. I do not even know where she grew up. So, if you don’t mind, I wonder if we
could spend just a few minutes talking about her as a person: her history, what
she has done in the remote and recent past, and the things she likes and
dislikes.”

Evie began. She described Mrs.
Maxwell— whom everyone affectionately called “Maxie”— as a dynamo. Anticipating
our unspoken prejudices, she remarked that people were surprised that someone as
big as her mother could have so much energy and be in constant motion. She had
grown up in Albany, New York, and moved with her family to Vermont when she was
in high school. She and her future husband, Elbert, met in their early twenties,
when both were working at a summer camp in the Green Mountains. After he
returned from World War II, he went to work as a machinist. She baked for
several area restaurants, but was primarily mother to the couple’s son and
daughter. Elbert died suddenly in 1989. With their children grown and on their
own, Janice started her own catering business a year after Elbert’s death. She
also found the time to chair the board of the county’s food bank and organize
its holiday collection drives.

In decades past, the town’s
police chief and school officials knew that Janice and Elbert Maxwell were
always willing to take in a troubled child or teenager for a few days— and
sometimes longer— until other arrangements could be made. A few of those kids
stayed a lot longer and became members of the extended Maxwell family.

Every member of that family
present at the meeting described Janice Maxwell as the best mother, aunt,
sister, and grandmother anyone could have. She was constantly calling and asking
about things they were doing. It was not because she was nosy— she was genuinely
interested and very much a part of all of their lives. Her granddaughter and
niece said that Maxie knew everything about them: what classes they were taking,
when their exams or major papers were due, what they were doing in sports and
clubs, even what boys they were dating! Cici said that she had taught Maxie to
text and they exchanged at least two or three messages a day.

I thanked them for their
descriptions. It had taken all of six minutes, but in that brief time those of
us who knew Mrs. Maxwell only as a patient got to see her as a whole and vibrant
person. I think we all better understood her family’s predicament: their hope
for her to live, their burden of decisions, their pressing fear and looming
grief. The few minutes of conversation would enable us to better care for her
and support all of them.

I asked the critical care doctors
to review Mrs. Maxwell’s current condition and the rationale for both
procedures. Dr. Geffen described her condition as generally stable, but was
careful to add, “She continues to be critically ill.” She explained that a
tracheostomy involves surgically placing a short plastic tube through the skin
of a patient’s neck and into her trachea, just below her larynx (or Adam’s
apple). The “trach” would protect Mrs. Maxwell’s vocal cords and the narrow
portion of her windpipe. The PEG involves surgically placing a plastic tube
about the width of a fountain pen through a patient’s abdominal wall to deliver
nutrition and hydration directly into her stomach. The consulting
neurologists explained that if the infection could be halted, it could take many
weeks to see improvement in Mrs. Maxwell’s level of awareness and function, but
that she would likely require substantial care for the rest of her life.

No one was suggesting that any of
her current treatments be withdrawn— at least not yet. But there was an unspoken
awareness that, at some point, more treatment might not be what was best for
her. At some point, we would likely need to discuss how she could die. Probably
not today, but in all likelihood soon.

Even without stating that a
patient is dying, by broaching the possibility— suggesting that it would be
reasonable to not escalate treatments further if the condition were to worsen or
even consider withdrawing life-sustaining treatments— twenty-first-century
doctors are in a difficult situation. People come to doctors to save their
lives, not to be helped to die. In these times, doctors may risk being fired by
a family for suggesting it would be reasonable to let a person die. People
demand second, third, fourth, and fifth opinions. For the persistent, there is
always a more famous medical center where they have “real specialists” for this
or that condition.

It is not just me and my ilk of
palliative care physicians who are at risk of being fired. I have seen highly
respected surgeons, intensivists, and oncologists fired from cases by angry
patients or families for suggesting that further treatment would be futile.
Often care is simply transferred to a doctor willing to persist. If that is
not possible, a medical center’s ethics committee gets involved in an effort to
reach agreement. Only if this course of action fails to resolve the conflict is
the matter brought to a court for a judge to hear. This process can take months.
Not uncommonly, the patient dies before any decisions are made.

Savvy and assertive advocacy is a
powerful and often essential factor in getting the best care possible. To be
effective, advocacy must be rooted in the reality of what is possible and
directed at obtainable goals; otherwise, it can be counterproductive.

It is important to make sure
doctors don’t give up treatments too soon on someone. Without ill intention or
incompetence on the part of doctors, occasionally people with complex but
treatable conditions are told that there is nothing else to be done to extend
their lives when, in fact, there may be. It is worthwhile to be wary of a single
physician’s sophistication, experience, or personal values— or a single medical
center’s technical capacity— and not let either unduly limit a patient’s
treatment options.

At the same time, it is
important to acknowledge the biological limits of treatment. Even the most savvy
and assertive individuals who are incurably ill— including those who choose all
aggressive treatments— eventually die.

In my experience, when a
patient’s disease is clearly progressing and complications are accumulating, the
condition itself serves as a counselor for both the ill person and his or her
family. By continually eroding quality of life or requiring ever more
medications to lessen suffering, a person’s deteriorating state of health
eventually brings even the most reluctant of their friends and relatives to
realize that the person they love is dying.

I’ve learned it is better to earn
people’s trust and stay involved. Our team earns trust, first, by attending
to patients’ most urgent needs, such as managing pain or other distress. Second,
concomitantly, we build relationships by regularly offering information about
the patient’s condition, explaining what it means, and responding to questions
in whatever depth patients and families desire. As changes warrant, “explaining
what it means” encompasses discussion of the implications of the patient’s
current condition on the person’s survival and the prospects for rehabilitation
and likely long-term ability to function, along with corresponding caregiving
needs. “Explaining what it means” is typically both labor- and time-intensive.
That’s okay. Communication is not ancillary or a chore in palliative care;
rather, it is the core therapeutic medium of our discipline. The time it takes
palliative clinicians to effectively listen, convey information, and respond to
questions and concerns is not time taken from our medical practice; it is the
practice.

This palliative approach of
building trust by managing symptoms, attending to family concerns, therapeutic
communication, and continuity is intensive care of a different sort. It is
certainly expensive, in terms of clinicians’ time and energy, but it is also
better in the long run by being both effective and efficient. In this manner
palliative care complements critical care by enhancing quality (and patient and
family satisfaction). Expensive as this approach to care is, compared with being
at odds with patients and families, and having to resolve and manage conflict,
best practices of this sort usually consume a lot less time and resources.

Intensive, lifesaving treatments
were essential to the best possible care when Mrs. Maxwell had arrived at the
local emergency department, was transferred to DHMC’s emergency department, was
admitted to the hospital, and was later transferred to the ICU. However, on the
day we met, things were different— or, in this instance, not different enough.
Her prognosis was increasingly bleak. Her family was struggling to determine
what the best care for Mrs. Maxwell was now. We all were. They still hoped for a
cure. Yet within the last week or so, most members of her family had come to
realize that it wasn’t going to happen. Still, it is one thing to know that
someone you love is dying and another thing to say it.

These were literally
life-and-death decisions. Without the ventilator to breathe for her, she
would likely die within a few minutes. Without medically administered nutrition,
she would die within weeks. Without medically administered fluid, she would die
within days. A decision regarding the tracheostomy was most pressing. Eventually
the inflated plastic cuff around the endotrachial tube would cause pressure
sores and scarring around the lining of her windpipe. As a general guideline, it
is prudent to perform “a trach” after two weeks of intubation, and at twenty-two
days, a decision was needed: to proceed or to withdraw the tube and, therefore,
disconnect her from the ventilator.

I thought to myself that it would
have been helpful for her family if Mrs. Maxwell had an advance directive on
file. Advance directives— a living will or a durable power of attorney for
health care— are legal documents in which people can state their preferences for
care if they are seriously ill and not able to make decisions for themselves. If
one existed, I could have used it to inform the conversation of the meeting. As
it was, in common with nearly 75 percent of adults in America, she had never
completed one.

Mrs. Maxwell’s condition and the
treatments being considered exemplified the situation these documents were
created to address.

A durable power of attorney
for health care document formally names a person to speak for you if you are
seriously ill and unable to speak for yourself. A living will provides
information about your preference for treatments if you become terminally ill
and are unable to make your own decisions.

Over time, these documents
increasingly have been combined as two sections of single forms. Advance
directives are legally recognized in every state. And states generally recognize
documents completed in another state.

In New Hampshire, where Mrs.
Maxwell was being cared for, by state law a power of attorney document is
necessary to confer formal decision-making authority for an incapacitated adult
to a spouse, child, or parent. Without such a document, no individual had
final authority to make important decisions about Mrs. Maxwell’s treatments.
Nevertheless, as physicians responsible for her care, we turned to Mrs.
Maxwell’s family to help us clarify goals of care and, as partners in the
process, of making these critical decisions. In fact, even when an advance
directive exists, and while recognizing the authority of the individuals
appointed in the document, we try to foster agreement among participating family
members in defining each patient’s goals of care.

I decided to see if Mrs.
Maxwell’s family had a sense of what she would have written in an advance
directive. I asked what family members thought Mrs. Maxwell would say about her
care, if she could speak for herself today.

Evie looked down at the table and
chuckled to herself. Then she raised her head and spoke, recalling an occasion
when her mother had talked about a neighbor who had suffered a paralyzing
stroke. “I remember Mom said that she wouldn’t want to live if she couldn’t
cook, eat, and ‘wipe my own ass!’ ” Hearty laughter signaled broad
agreement.

Ellis, Evie’s brother, said
that he was sure their mother would think that lying in an ICU this long was
ridiculous and would want to be put out of her misery. Frank and Ellis’s wife
both nodded. Ellis Jr., who I guessed to be in his mid-twenties and
had explained during the introductions that he had lived with Maxie during his
senior year in high school, agreed that she would not want to be kept alive
on machines.

For a few minutes, there was a
gathering consensus that Mrs. Maxwell would prefer to die gently and I thought
that perhaps today was the day. But then her niece, Cici, who had been quiet
since the discussion of Mrs. Maxwell’s history, spoke up.

“It isn’t right just to let
her die,” she said softly, looking down at her hands held together resting on
the conference table. “Only God can take a life.”

The comment blew through the room
like a winter wind through an open door. Around the table, the atmosphere
suddenly chilled and people gathered their shoulders to their necks and looked
down.

I later learned that Cici had
battled alcoholism and drugs during her own teenage years. A little over two
years ago she joined AA and had been clean and sober since. She had embraced
Christianity as part of her 12-step program. Maxie had been a big part of Cici’s
recovery.

Evie broke the uncomfortable
stillness. “Cici, no one is talking about killing Maxie. But she is not getting
well.”

“But she still can. They haven’t
said she absolutely can’t get better. Other people in her condition have gotten
better— even after years in a coma. Miracles happen, you know.”

Miracles do happen. Sometimes
against all odds and without explanation deathly ill people suddenly become
better. There’s no denying it— and I wouldn’t want to. It seems the nature of
miracles that they happen rarely. Still, who is to say a miracle could not
happen here?

If I had known the Maxwell family
better— if I had had the time to earn their trust— I might have taken a more
assertive tact. I might have asked Cici to consider that Mrs. Maxwell could have
died abruptly that morning in their kitchen and that her initial survival was
already a miracle. I might have suggested that the past few weeks have given her
and her family precious time to spend with her aunt and the chance to support
one another. If I had known Cici better and had been more aware of her devoutly
Christian beliefs, I might have asked her to share with me her understanding of
how people whom God loves eventually die. I might have gently confirmed that she
believed that God loved her aunt Maxie. When she said, “Yes, of course God loves
her,” I would have asked Cici if it were possible that God’s will was already
being done?

But on this day, having just met
them all, saying any of these things risked going too far. The question of
miracles effectively foreclosed any consideration of allowing her to die today.

The tenderness of Cici’s plea
and her family’s need to support her in her devotion to Maxie were apparent. I
tried to assure Cici that no one was trying to play God or in any way lessen her
aunt’s chances of getting well. I said we were all trying to respect her
wishes, recognizing that even with intensive care Maxie was at very high risk of
dying. Cici made eye contact with me briefly, but mostly looked at her hands
resting on the conference table. She did not seem angry, just sad and hurting.

As the meeting drew to a close,
the family and we assembled professionals came to the decision to give
treatments a little more time and jointly agreed to proceed with the
tracheostomy and PEG tube. Both would be done in the operating room the next day.

With those major decisions made,
I asked if there were any limitations on her treatments that the family would
want to set. I specifically discussed CPR and the use of vasopressors,
medications that tightened arteries and made the heart beat faster and stronger,
but at the cost of straining the heart and other organs. Her family— with Evie
and Ellis taking the lead— decided that treatments should not escalate any
further. This meant that if her blood pressure dropped due to a new
infection or sudden heart problem, she would not be treated with “pressors.” If
her heart suddenly stopped, no one would push on her chest and no electrical
shocks would be administered to her heart. Cici sat in quiet acquiescence during
that part of the discussion. She seemed satisfied that she had prevailed in a
room of her elders and was protecting her aunt from a premature death.

I assured members of her family
that our team would be checking on Mrs. Maxwell daily and doing whatever we
could to enhance her comfort. I was scheduled to be the physician on service
this Thanksgiving, so I said I would be looking in on her personally. I asked if
they would like us to bring a CD player and her favorite music to her room. Yes,
they said that would be good. “She loves Elvis Presley and Johnny Cash,” Ellis
said. “And anything by Garth Brooks,” Cici added.

“Okay,” I said, “I know we have
some Elvis and Johnny Cash. I will have one of our volunteers bring a boom box
to her room and a selection of music. Feel free to bring more. Please also bring
a few photos of Maxie if you have them. I would love to see a picture of her in
happier times. Pictures will help all of us to know her a bit better.”

We agreed and arranged to meet
again at three p.m. on the Tuesday afternoon after Thanksgiving. I thanked them
all for coming and we slowly dispersed.

I agreed with the decision we
reached as a group, but I was not entirely at peace with what had occurred. I
wondered what the meeting looked like from Carrick’s perspective.

He and I would discuss the
content and process of the meeting later in the day and I reflected on the
things I wanted him to learn from what had transpired. The meeting had included
key elements of physician-family communication and shared decision-making. Well
and good. Yet the Tuesday after Thanksgiving was twelve days from now; it seemed
a very long time in the future. I knew, after all, that Mrs. Maxwell was not
going to survive. It would be a fair criticism to say that in concluding the
meeting as we did— as I did —we had kicked the can down the road. It would be
easy to argue that the operations she was about to undergo were pointless.
Carrick and I would discuss the collective, resource implications of this
situation, the other patients who might benefit from that ICU bed— since as
usual, the ICU was full— and the thousands of people across the country in
similar predicaments. There are 3,228 hospitals with ICUs and a total of over
67,000 ICU beds in our country, and many are occupied by people who have been
critically ill for weeks on end.

I planned to explain to
Carrick my assessment that being more directive today would have been
heavy-handed. To some of the family, if only out of loyalty to Cici, it might
have felt rushed. To Cici, it might have felt cruel. Of course, as a physician
in such situations, I never know where the breaking point lies, where trust will
fracture, giving way to conflict, unless I take a step too far.

In fact, despite the pressure on
health care resources, we could continue to treat Mrs. Maxwell for her kidney
failure, respiratory failure, and heart failure, even if it were only to give
her family time to adjust to the reality that she could not get well. In our
hospital, on this day, as in hospitals across the country, there were sufficient
resources to do so. The financing of American health care well supports such
treatments. In many parts of the world ICU beds and ventilators are in scarce
supply. Had Mrs. Maxwell been intubated at all in those countries, it would be
necessary now to remove life support and allow her to die. But not in our
hospital, not in the United States, not today. Not yet.

This clinical scenario is
familiar to anyone who practices in hospitals and ICUs, particularly within
referral centers. Of course, Mrs. Maxwell’s situation is unique. She is a
one-of-a-kind person with a unique life story. Still, the basic set of
circumstances that had befallen Mrs. Maxwell and her family occurs multiple
times a month in our medical center’s ICUs and multiple times every day in
hospitals across the United States.

As my mind’s eye scanned the two
main ICUs at Dartmouth-Hitchcock, I saw snapshots of several other patients and
families who were currently in similar predicaments:

WANDA SMITH is twenty-seven years old. A week ago
she had an operation to remove a large tumor that had wrapped around her uterus,
bladder, and rectum. There is now no sign of cancer, meaning she is likely
cured. It would be a remarkable success, except that after the twelve-hour
surgery, she has yet to wake up and is still not breathing on her own.

DONALD GILBERT is a seventy-five-year-old husband,
father, and grandfather who suffered a stroke while shaving one morning. A
clot formed in his atherosclerotic middle cerebral artery, one of the main
branches of the carotid artery, and caused mechanical blockage and spasm of the
arteries beyond the clot. Thrombolytic medications administered by the stroke
team in the emergency department failed to improve his condition. He cannot
speak and makes few intelligible responses. Mr. Gilbert has been able to come
off the ventilator twice. Both times he breathed on his own for fewer than
twenty-four hours before a sudden deterioration— likely a mucus plug in a
bronchus or aspiration of saliva— resulted in the HERT team being called and the
endotrachial tube being urgently reinserted. Now, as his older brother has
observed at his bedside, “he looks tuckered out.”

IDA SAMUELS is sixty-two and has battled lung cancer for
the past three and a half years. Our team knows her well and has followed
her in the clinic and during hospitalizations in conjunction with the thoracic
oncology team. Mrs. Samuels has never wanted to discuss her wishes for care if
she were to die because she felt doing so would violate her commitment to being
positive. For the same reason, she has never filled out advance directives. She
was a highly motivated patient. As soon as cancer was diagnosed, she quit
smoking. She went through aggressive chemotherapy and respiratory therapy, and
had half of her left lung removed. Within a year, the cancer returned in her
lung, lymph nodes, and bones. That was when she was referred to us, nearly
eighteen months ago. She had already lived much longer than most people with
similar conditions. Since then she has spent weeks in the hospital from
pneumonia that kept recurring due to narrowing of the bronchus— or windpipe— to
her remaining left lung. Seven weeks ago, using a fiber-optic bronchoscope, a
pulmonologist placed a stent, which widened the opening. Now, however, pneumonia
was back with a vengeance and she was back in the ICU. In addition to the
pneumonia, there is infected fluid around her lung— a condition called empyema—
which required a chest tube to be placed through her skin, between her left
lower ribs, to continually drain the space between her lung and chest wall. She
is on a ventilator, sedated, and paralyzed because she was obviously suffering
and thrashing against the ventilator. She has an associated bacterial
bloodstream infection that is keeping her blood pressure low and requiring low
doses of vasopressor medications.

KEVIN HARDY is a forty-two-year-old man who had a sudden
cardiac arrest at the gym. Bystanders performed CPR and the EMTs were able
to reestablish a pulse. Once at DHMC he underwent emergency cardiac
catheterization. A cardiologist was able to locate the blockage and open the
clogged artery with a small balloon and place a small expansile stent that looks
like a Chinese finger trap. The angioplasty was successful. His heart problem
was solved. To minimize swelling and damage to his brain, his body was cooled to
33 ° centigrade (91.4 ° Fahrenheit). Two days later, after slowly rewarming him
to 37 ° centigrade (98.6 ° Fahrenheit), he remains densely comatose with no sign
of neurological recovery.

AND THEN THERE IS MRS. WALLACE in one of the
slightly larger, corner rooms. Her story and her husband’s devotion had already
made an indelible mark on me and on many of us taking care of her. At age
seventy-eight Mrs. Wallace had made good use of twentieth-century medicine.
She survived breast cancer in 1989 and went on to have bilateral hip
replacements and coronary artery bypass surgery. She played golf and snowshoed
every year and felt well until early last spring— it might have been in
mid-April, as she told the intern who took her history on admission to the
hospital. She had felt tired for days on end and lost her appetite. Blood tests
her doctor ordered showed an alarmingly high white blood cell count and a bone
marrow biopsy confirmed that she had a treatable lymphoma.

During the rest of the spring and
early summer Mrs. Wallace successfully completed three rounds of chemotherapy,
tolerating recurring episodes of mouth sores and loss of hair. By mid-summer she
felt like her old self. However, in August she began slurring her speech and
dozing off in the middle of the day, even at meals. Her thyroid was normal.
Scans of her brain showed some nonspecific white matter changes. A lumbar
puncture— also called a spinal tap— confirmed that there was lymphoma in her
cerebral spinal fluid and brain. It was no longer curable.

By then Mrs. Wallace was able
only to open her eyes briefly when her name was called. She occasionally clasps
a hand placed in hers. Her husband of fifty-seven years, retired Army Colonel
William Wallace, lovingly cares for her at their home with the help of privately
hired nurses’ aides. He calls the ambulance whenever she runs a fever and, as a
result, she has been hospitalized four times throughout the late summer and
fall.

Mrs. Wallace had a PEG tube
placed nearly three weeks ago. She has been in the hospital ever since. The
procedure of placing the PEG tube went smoothly. However, Mrs. Wallace’s body
would not tolerate even a fraction of the amount of nutrient solution (similar
to baby formula) required to meet the normal caloric needs of a person of her
height and weight. Her intestinal tract seemed inert, unable to move or absorb
the liquid being dripped into her stomach. Whenever the rate of formula was
increased, she developed diarrhea. She also ran “high residuals,” meaning that
fluid was just pooling in her stomach and not moving through. Additionally, and
more problematically, despite being kept propped at 30 degrees or higher, Mrs.
Wallace developed recurrent episodes of coughing that were clearly the result of
formula refluxing up her esophagus and down her windpipe. Now she is back in the
ICU with florid aspiration pneumonia, once again intubated and on a ventilator.
Mr. Wallace is a constant presence at her side.

Each of these cases is unique—
one-of-a-kind individuals and circumstances. Yet there are discernible themes.

To remain alive, each of these
people will need protection of their airway, and very likely prolonged
ventilation, as well as medically administered nutrition and hydration. In each
case the chance of recovering function is remote. It is not just that the
prospects are slim that the ill person will work, drive, or even walk again. The
chances are infinitesimally small that any of these people will ever again
perform the most basic elements of self-care: eliminating, washing, brushing
one’s own teeth, combing one’s own hair, and feeding oneself.

Their dependency does not
diminish their worthiness of our caring, but it is relevant to the medical
treatment decisions that need to be made. Dependency alone is not a reason to
withdraw life-prolonging treatment. Quadriplegic people are dependent on
others for the most basic elements of care, but most achieve a satisfying “new
normal“ and many lead active, productive lives. In contrast, none of the ICU
patients I just described will ever again enjoy a meal or a conversation, read a
book, watch a movie, surf the Web, or take a drive. The distinction is valid.
People may disagree about what quality of life is worth sustaining and there is
far from a social consensus. But for each individual, it is relevant to consider
what quality of life the person, himself or herself, would consider worth
sustaining. I contend that the combination of a life-threatening illness,
complete physical dependence, and a quality of life that is devoid of value to
the person whose life it is constitutes reasonable rationale for decision-makers
to allow a person to die.

Of course, to families in pain
things like ethical analyses and rationale, clinical categories and prognostic
indicators all seem irrational and irrelevant.

Before his stroke, Mr. Gilbert’s
family was looking forward to spending Christmas together in Hilton Head, a dual
celebration of the holiday and their fiftieth wedding anniversary. Mr. Hardy,
the forty-two-year-old man “saved” by CPR, is the principal of a middle school
in New Hampshire’s Lakes Region. After his cardiac arrest, the entire town
organized vigils and meetings and draped trees and telephone poles with white
ribbons in his honor. Wanda Smith, who has yet to wake up from her cancer
surgery, is the mother of a twenty-two-month-old son. Her husband and parents
and brothers and sisters are bereft, cannot envision a future without her, and
rarely leave her side.

Mrs. Samuels’s son and his wife
and young daughter visit every weekend, though they only stay for a short time.
They live in Connecticut and have been kept at a distance both literally and
figuratively by his domineering mother. Now that her lung cancer has progressed
and she is insensate in the ICU, they feel conflicted. They agree that she would
never want to give up, but they cannot bear to see her suffer and feel that in
her current physical state, she is already dead. Colonel and Mrs. Wallace have
six children, eight grandchildren, and two great-grandchildren, at least four of
whom are in the ICU waiting room at all times. The colonel is always at her
side, stroking her arms and legs with lotion and talking to her softly. Every
day, with an almost childlike innocence that is in contrast to his engineering
accomplishments, he asks the nurses and doctors about new treatments for
lymphoma that friends have suggested or he has read about.

Often I think that if a family
could hear the voice of the person who is critically ill, it would help them
come to a sound decision. But even that would not be a panacea. Making these
decisions is sometimes just as hard when people can speak for themselves.

Carrick and I stride past the
corner room of Ralph Barker, a chronically critically ill patient in the
ICU who is also in a difficult situation, except that Ralph makes his own
decisions. I met Ralph (he doesn’t like to be called Mr. Barker) over two months
earlier, when the Palliative Care Service was asked by the Critical Care Service
to help Ralph and his family clarify goals for his care.

Ralph is fifty-six years old,
just a few years younger than I am, but a role of the genetic dice left him
diabetic, prone to autoimmune diseases, and chronically ill. His kidneys
stopped working when he was forty-nine and his lungs are scarred from
inflammation and repeated infections. He has chronic colitis with diarrhea and
ulcerating skin sores. He needs daily dressing changes to ulcers on his legs and
back, daily colostomy care, and kidney dialysis three times a week. He’s mostly
confined to bed or a special wheelchair, because he lost his right leg to a bone
infection a few years and more than two hundred pounds ago. Despite all this, he
had been enjoying his life at home, mostly thanks to his devoted, selfless, and
utterly exhausted wife, Sallie.

One day in early September, Ralph
suddenly became septic; a profound infection dropped his blood pressure and
ability to breathe. He almost died in the ambulance, but after two weeks of
antibiotics, mechanical ventilation, and round-the-clock nursing care, Ralph is
once again stable. Sort of. Now he has a tracheostomy and still needs a
ventilator at night to breathe. Ralph isn’t dying today, but he is dying.

He is also suffering. Above all,
Ralph says he doesn’t want to die. He’s never wanted to think about dying and
hates when we bring up the subject. He’s never completed an advance directive
giving anyone formal authority to speak for him if— but really it is when —he
becomes unable to speak for himself.

Every time I see him, he pleads
for two things: for me to prescribe a medicine to make him feel better and for
me to send him home. Panicked anxiety makes him feel breathless even when his
oxygen levels are fine. Unless he’s somnolent, he craves more doses of sedative
medication, but that just makes his breathing worse and makes the prospect of
going home an ever-more-distant mirage.

He’s never told Sallie or any of
his doctors how he would want to be taken care of if he couldn’t get well. It is
no wonder she feels overwhelmed. As if death were optional, Ralph wants
everything possible done to prolong his life, including CPR when his heart
eventually stops. He repeatedly tells us he wants to live and go home. Instead,
he’s confined to the ICU by failing organ systems and the choice he’s made to
accept technological support to stay alive. In reality, state-of-the-art
treatments can’t restore anything resembling physical health for Ralph. Since he
isn’t interested in exploring emotional or spiritual ways through his thorny
predicament, all any of us seems able to do is prolong his dying.

In her book Refuge, Terry
Tempest Williams tells the story of her mother’s life with illness. One day,
during the last months of her life, Williams’s mother reflected, “Dying
doesn’t cause suffering. Resistance to dying does.” I think of this insight
often as I meet with and listen closely to people like Ralph, as well as
families of people who are critically ill.

People with a sick relative or
close friend sometimes ask me how someone would know if they and their family
are in this sort of predicament in which resistance to dying is causing
suffering. While I am loathe to give advice that can be misapplied to a
particular person or specific condition, there are some conservative
generalizations I can offer.

If your husband’s cancer has
continued to grow after the first surgery and radiation, and two or three
successive chemotherapy regimens, you may be getting close. The hard truth
is that oncologists use their best drugs first. The answers to other questions
can help estimate how close: Has the cancer spread to multiple places, including
one or more of his bones, liver, lungs, or brain? Has he developed blood clots,
despite being on anticoagulants? Has he lost weight? How many weeks has it been
since he had an appetite? How much help has he been needing to get around, climb
stairs, even bathe?

If your mother has been in the
ICU for two or more weeks and things are not getting progressively better, you
may be in this predicament. Long ICU stays tend to be worrisome from a
prognostic standpoint. Is she requiring a ventilator, or CVVH (continuous kidney
dialysis) or vasopressor medications? When a patient has been in the ICU for a
long time, each of these treatments is a telling indication of persistent organ
failure. Count the number of “lines”— IV, arterial catheters, internal
monitors— the number of tubes training internal cavities, the number of wound
dressings, the number of antibiotics, the number of sedatives she requires. The
higher the numbers, the more seriously ill people are.

To be clear: I am generalizing
and there are exceptions to everything I have just described. However, if these
situations sound familiar, you and your family may already be faced with
balancing the quest to live against the quantity of suffering that accompanies
resistance to dying.

People who are physically healthy
avoid talking about dying, partly by assuming it will be easier to discuss such
matters “when the time comes.” Yet, people who are sick and their families
discover that it doesn’t always get easier. As illness progresses, it sometimes
gets harder. Sometimes even bringing the subject up can feel disloyal, a
betrayal of a pact to get better.

These are as serious and unfunny
as any situations I know. Yet the most apt description I know for this
predicament comes from the late comedienne Gilda Radner. Her 1970s Saturday
Night Live persona, Roseanne Roseannadanna, famously observed about life in
general, “If it’s not one thing, it’s another thing. But it’s always something.”
Years later, she was diagnosed with ovarian cancer, underwent extensive
treatments and experienced a sustained remission, and became an outspoken,
effective advocate for people living with cancer. She chose It’s Always
Something for the title of her book about living with cancer. Gilda Radner
died of the disease in 1989.

Everyone dies of something. Every
time a new complication develops, the doctors will assign it a name, giving you
another diagnosis. It may be a new infection, or a new source of bleeding, or
clotting (and sometimes both at once). Each diagnosis has a potential treatment,
which the doctors will dutifully tell you about— if you haven’t already looked
it up online.

Yet when someone’s underlying
illness is progressing or their general condition leaves them weak and with
little chance of turning things around, every decision to treat a potentially
lethal problem means the person will have to eventually succumb to something
else. The question then becomes: What would be an acceptable way for you— or the
person you love so much— to die?

That’s the question all of us are
eventually called to wrestle with for ourselves and for the people we love most
in life. As a palliative care physician, it is my job to help people in these
unenviable situations to clarify options and make whatever decisions are best
for them.

Carrick and I walked from the ICU
through automatic double doors onto an inner, staff-only corridor. Except for a
housekeeper at the far end of the hall, we were alone. For a while we walked
without speaking, each of us still pondering the meeting and wondering what we
would say to the other. About a hundred yards from our office, I said, “This job
will keep you humble.”

Carrick laughs respectfully and
after a few steps farther, adds, “But then, as I have heard you say, ‘We are
just here to serve.’ ”

“Aha! You have been paying
attention.” I laughed with him. Humor and camaraderie are good tonics for irony.
As a physician, some-times being “here to serve” means offering the best of
one’s mind and heart without being attached to what happens, at least not overly
attached.

“You know the other thing I often
say? ‘It is not about us,’ ” I say. It is a remark without irony, one best made
in private— senior physician confiding to a senior physician-in-training. I
spoke in the tradition of a profession that has through the centuries passed the
craft and art of practice from one generation to the next.

As a doctor teaching other
doctors, I deliberately call attention to the pitfall of developing an inflated
sense of our own importance. Doctors are important. But ultimately, it is not
about us. After all, the sole rationale for our profession is the well-being of
others, primarily the patients we serve. At the same time, I try to instill— and
model— the value and capacity of being gentle with oneself. Ultimately, no human
being can fully control what happens to another. Some things are beyond the
grasp of medicine. We can, however, be of service. We can show up, bringing
whatever benefits science and technology have to offer, while never losing focus
on the persons we serve. That has to be enough.

Sitting around the conference
table in the Palliative Care office nibbling on grapes and cookies left over
from a No One Alone volunteer meeting, Carrick and I debriefed each other about
the dynamics of the meeting. I explain why I said what I did— and why I didn’t
say more. It had been a hard conversation for Mrs. Maxwell’s family to have.
Carrick also had the sense that if we had applied directed pressure, we would
likely have pushed Cici beyond an emotional breaking point and possibly evoked
anger in others. Tincture of time was called for.

Family members I have spoken with
months after such meetings have said that during the discussion of treatment
decisions— with the very life of their wife or husband, mother or father, sister
or brother, son or daughter hanging in the balance— they felt their head
spinning, their heart breaking, and their world coming apart. Some have told me
that they could not hear what was being said. Some could hear the information
but only understand it intellectually, or the words were clear but it felt
unreal. One man described feeling unsteady, as if walking in a canoe, unable to
take a step or make a decision one way or the other.

That Tuesday after Thanksgiving
never came for Mrs. Maxwell. Instead, her family and doctors reconvened at one
p.m. on Sunday of the holiday weekend. At about 3: 45 Friday morning she stopped
triggering the ventilator at all, and her legs and arms stiffened and rotated
into a “decerebrate posture,” well recognized by doctors and nurses as an
ominous sign. It signaled that pressure was rapidly building inside her head
causing downward force on her brain and pushing her brain stem against the bony
ridge of the circular opening at the base of her skull, which, in turn, causes
normally autonomic functions like breathing to stop. The process is called
herniation, and it is lethal.

The neurosurgery resident on call
was urgently paged to consult and administered IV mannitol, a medication that
draws fluid out of the brain, dehydrating it to decrease swelling. An emergency
CT scan showed new bleeding and swelling in the right side of her brain, which
shifted the rest of her brain downward and to the left. The neurosurgeons then
emergently took Mrs. Maxwell to the operating room and installed a drain through
her scalp and skull and into the pocket of blood in the right parietal lobe of
her brain to stem the buildup of pressure. This halted the impending herniation
of her brain and her imminent death.

Evie had been called at 5: 20
Friday morning with news of her mother’s turn for the worse and, in spite of the
group’s decision not to escalate treatments further, gave permission for the
scans and subsequent surgery. I saw Evie later in the morning, when her mother
had just returned to the ICU from the operating room, and again on Saturday
afternoon after completing the rest of my rounds. She had taken a leave from her
job managing the deli of a large supermarket and was spending most of the time
at the hospital. Ellis and his wife and son were visiting as well. Dr. Geffen
was no longer the critical care attending physician for Mrs. Maxwell, but I
spoke with Dr. Rashid, the critical care fellow, who knew Mrs. Maxwell’s case
and her family well, and we arranged with the family to meet on Sunday
afternoon.

We met in the same conference
room, amid telltale evidence of a late Saturday night staff meal of pizzas and
sodas. I quickly removed empty food containers and unopened Diet Pepsis from the
table and pushed the overflowing trash container into a corner. This time the
only clinical staff at the meeting were myself, Dr. Rashid, and Jolene Hunter,
her ICU nurse. The Maxwell family was well represented by Evie and Frank, Ellis
and his wife, Ellis Jr., and Cici. In the past two days Evie and Ellis had been
carefully updated regarding the changes in her neurological condition, the
scans, the medications she had received, and her surgery. They knew that her
prospects for recovery were now nonexistent.

After briefly reviewing the
things that had been done to maintain her physical condition in the past week, I
mentioned that, in addition to all the treatments, we were also doing a few
things intended to comfort and honor Mrs. Maxwell.

Chaplains were seeing her every
day and praying over her. Her own minister had visited twice— and was here now,
having driven over after their congregation’s Sunday service. Our No One Alone
palliative care volunteers were also visiting daily and making sure that the CD
player was working and that there was music playing in her room. A “Get to Know
Me” poster was taped on a floor-to-ceiling sliding glass door that formed the
wall between her room and the common space of the intensive care unit. On it her
family had written that she likes to be called Maxie, and next to “occupation”
had written, “the best baker and mother in the world.” The rest was left blank
except for at least a dozen photos of Maxie in happier times. She usually had an
apron on in the pictures, often standing in a kitchen or behind a dinner table.
There were holiday pictures and one of Elbert and her at a fair. In most
pictures there were several children, most of whom were clearly unrelated. On an
old photo that had been obliquely taped in place, she appeared to be in her
forties and was sitting behind a much younger, trimmer Frank on a motorcycle,
holding her son-in-law tightly as he grinned to the camera.

I had looked at every photo and
now commented on the richness of their family life. “I can tell that she will be
sorely missed,” I said.

Frank piped up in a groan. “Doc,
she is already missed,” he said.

There was a moment’s silence, and
then Ellis Jr. laughed, which caused the rest of the family to giggle
self-consciously. The medical professionals in the room sat quietly clueless
until Evie explained the inside joke. Maxie was known to bake eight to ten pies
for Thanksgiving dinner; there would be pumpkin and peach and two kinds of apple
and coconut cream pies and at least one of Frank’s favorite, a pecan– maple
sugar pie. This Thanksgiving he had to settle for just apple and pumpkin and he
had grinned and borne the hardship.

The moment’s levity did not
diminish the solemnity of our discussion. Though it was expressed with humor,
Frank’s statement expressed the stark fact that Maxie was irreplaceable. Things
would never be nearly the same. In so many ways, she was already gone. They
would still be a family connected in their shared loved of Maxie. Even the
foster children she helped raise and friends who were not related to Maxie by
blood or marriage would always share a bond of their love for her and how
important she had been in their lives.

“When we last met, we had planned
to come together again on Tuesday and I expected that we would have difficult
decisions to make about how long to continue intensive treatments. As it
happens, I think that the biology of her condition is now making those decisions
for us.” I paused before concluding, “It is fair to say that nature itself has
declared that Mrs. Maxwell is dying.”

In discussions of this sort, I
use the word “nature” knowing that for religious people in the room, it may be
heard as a synonym for God. That’s okay. I only presume to talk about God with
patients if I know what they believe. Otherwise, I usually ask them to tell me
about their beliefs, if it would be helpful for me to know. In learning about
their beliefs, traditions, and the language they use, I can often communicate
with and support people in little ways that can mean a lot.

In that spirit and hope, I spoke
softly to Cici. “I know that you have felt that God was looking after Maxie and
that he had a plan. Do you think it is possible he is calling her home?”

“Yeah. I think Maxie is tired and
she is ready to go to heaven,” she said. Her expression was sad but composed.
She was not angry and seemed resigned.

“So, I sense people here are in
sad agreement that the time has come to allow Mrs. Maxwell to die.” I paused and
looked at each person in the room. Nods and eye contact affirmatives all around.
Except for myself and Dr. Rashid, people were touching or hugging the person
next to them.

“I want to assure you that she
will not feel distress as the ventilator is stopped and endotrachial tube is
removed. Her death will be gentle. We will medicate her with extra doses of pain
medication and a sedative— and will be standing by if there is any hint of
discomfort. Sometimes people live for minutes to a few hours after a ventilator
is stopped, but in this particular situation, I expect she will die very
quickly.

“We are not in a rush to do this.
If you wish to take a few hours to have family or friends visit, please do.”

Evie and Ellis both had a list of
people whom they had notified and had been coming by throughout yesterday, last
evening, and this morning. They felt that they would need only another few
minutes at her bedside with her, once again, the center of the family. Their
minister would say a few prayers. They did not want to be present when she died.

This meeting lasted just twenty
minutes.

Forty-five minutes later, I
accompanied Dr. Rashid during the procedure to withdraw the ventilator from
Mrs.Maxwell. We had not worked together in this manner before. As a senior
physician and as an educator, I wanted to make sure before proceeding that Dr.
Rashid had a clear understanding of the procedures. He and I reviewed in detail
what medications we would be giving, in what doses, and the sequence of steps
we’d take in discontinuing the ventilation.

While Mrs. Maxwell’s family and
minister visited and prayed at her bedside, Dr. Rashid and I met with Jolene,
her nurse, and a respiratory therapist outside her room. We discussed what we
expected to occur and agreed on the doses of fentanyl, a narcotic pain
medication, and midazolam, a Valium-like sedative, to use and made sure extra
doses were immediately available if needed. Since family would not be in the
room, we decided to leave the cardiac monitor on to follow the electrical
activity of her heart, while turning the audible alarms off.

Her family left her room and
headed for the waiting room.

As Dr. Rashid and I stood by,
Jolene administered the medications and the respiratory therapist turned off the
ventilator and disconnected the ventilator from Mrs. Maxwell’s tracheostomy
tube. She died peacefully. There was no hint of struggle, no grimace, twitch, or
moan. The only perceptible change as the cardiac tracings went from a sinus
rhythm at 86 beats per minute to asystole— no beats at all— was an abrupt change
in her color from flesh pink to steel gray.

As Jolene cleared away now
extraneous equipment from around Mrs. Maxwell’s bed, Dr. Rashid and I went to
the waiting room and informed Evie, Ellis, and the other members of her family
that she had died peacefully. We invited them to spend time with her body if
they wanted to do so. [33-65]